1. Michael and Sharon Shipley
My Story and Yours
Michael and Sharon Shipley
Recipient/Donor
Husband and Wife

2. Mike’s Family History
1945 – Captain Thomas Hickey USAF(my father), towards the end of WWII.
Died in 1961 from Polycystic Kidney Disease (PKD) at the age of 41. I was 5 years old at the time.

3. Mike’s Family History
1956 – Left to Right: Elizabeth (Betty), Michael (being held), Robert, Thomas & Nancy.
My father, Thomas was the photographer.

4. Mike’s Family and Polycystic Kidney Disease (PKD)
Thomas Sr. – Died 1961 of PKD
Thomas Jr. – 1998, Robert (brother) donated kidney, Good Samaritan Hospital, Phoenix, AZ
Nancy – 2003, Deceased donor kidney, Univ. of WI, Madison
Michael – 2005, Sharon (wife) donated kidney, Univ. of IL, Chicago

5. Mike’s Siblings, Their Families and Kidney Disease
Nancy
2 children positive, 1 child not tested
Thomas
Adopted two children
Robert
Child born with 1 kidney
Michael
1 child positive, 1 child negative

6. What is Polycystic Kidney Disease (PKD)?
PKD is a genetic disease (passed from an affected parent to their child) causing uncontrolled growth of cysts in the kidney.
A normal kidney is the size of a human fist and weighs about a third of a pound.
Once a person has PKD, they have a 50 percent chance of passing it on to each of their children.
Also known as Autosomal Dominant Polycystic Kidney Disease (ADPKD).

7. What is Polycystic Kidney Disease? (continued)
Affects approximately 600,000 people in the US
PKD is the number 4 cause of kidney failure in Americans
Found in all races and occurs equally in men and women
Imaging tests such as ultrasound can be used to screen for PKD

8. PKD Kidney as Compared to a Normal Kidney (kidneyfund.org)

9. Size Comparison of Football to PKD Kidney (kidneyfund.org)

10. Common Symptoms of PKD Kidney cysts Enlarged kidney(s) Liver cysts
Hypertension (high blood pressure)
Back and/or side (flank) pain
Blood in the urine
Frequent urinary tract infections
Kidney stones
Kidney failure

11. The Future of PKD Tolvaptan To date, there is no cure for PKD
Approved for use in Japan, Canada and Western Europe
In the US, the Reprise Trial, may slow the progression of kidney disease in PKD
US FDA requested the Reprise Trial with expected completion in late 2017
To date, there is no cure for PKD

12. Mike’s Story
Pre Transplant

13. What Are The Options For Patients With Kidney Disease?
Dialysis
Hemo
Paritoneal
Transplantation
Living Donor Kidney
Deceased Donor Kidney
Average Longevity
5 to 10 years
12 to 20 years
8 to 12 years

14. Our Family

15. What Is The Transplant Wait List?
United Network For Organ Sharing (UNOS)
UNOS manages the list of all people across the U.S. waiting for an organ transplant.
UNOS ensures deceased donor organs are distributed fairly using a transparent system.

16. What Is The Transplant Wait List? (Continued)
Kidneys
Blood type and antibody matching
Time with kidney failure
Priorities
Being a child
Past live kidney donor
Wait Time
Not on dialysis
Have a GFR of 20 or less

17. Average Wait Time For A Kidney Transplant
Nationwide 3 to 5 years
Factors that determine how long you wait
How well you match with the available kidney.
Your blood group and if you are sensitized with high antibody levels (from prior failed transplants, blood transfusions, and/or pregnancies).
How many donors are available in your local area.

18. Sharon’s Story
Pre Transplant

19. Chosing a Transplant Center Things To Consider
Insurance coverage and cost
Location for ease of going to/from the transplant center
Living donor donations
Participates in a “kidney paired exchange program” (not available in 2005)
Wait time for a kidney transplant
Each center has their own criteria for accepting patients for transplant
Support group availability

20. University of Illinois Hospital & Health Sciences System

21. Sharon’s Story
Transplant
July 12, 2005

22. Da Vinci Robotic System

23. Mike’s Story
Transplant
July 12, 2005

24. UIC Hospital Kidney Transplant

25. UIC Hospital Kidney Transplant

26. UIC Hospital Kidney Transplant

27. UIC Hospital Kidney Transplant

28. UIC Hospital Kidney Transplant

29. UIC Hospital Kidney Transplant

30. UIC Transplant Picnic

31. UIC Transplant Picnic

32. UIC Transplant Picnic

33. Sharon
Closing Comments

34. Benefits of Living Donation
Having a living donor eliminates the recipient’s need for placement or shortens their time on the kidney transplant waiting list
The survival rates are significantly better
The recipient knows the donor’s lifestyle/medical history (and after 25 years Mike should of known mine)
The living donor’s kidney almost always starts functioning immediately
The recipient has time to plan for the surgery

35. Benefits of Living Donation (continued)
The recipient may have a chance to avoid dialysis
The surgery can be scheduled at a mutually agreed time
The most important aspect of a living donation is the psychological benefit. The recipient can experience positive feelings that the gift came from a loved one or a caring stranger. In turn, the donor experiences satisfaction of knowing they have contributed to the improved health of the recipient.

36. Transplantation Statistics
Currently 116,649 people in the U.S. waiting for transplants
Transplants by organ type (1/1/88 – 7/31/17), Kidney 59 %, Liver 21.6 %
As of 9/6/17, Illinois has 4,400 people on the kidney wait list

37. Finding A Living Donor Family Relatives Friends Co-workers Strangers
Advertise, including social media

38. Finding A Living Donor (Continued)

39. PKD Walk